The Scott & White Family Caregiver Program: Implementing the REACH II Intervention Components in a Healthcare Setting Alan B. Stevens Vernon D. Holleman-Lewis M. Rampy Centennial Chair in Gerontology Scott & White Healthcare

The Scott & White Family Caregiver Program First two years funded by the Johnson & Johnson/ Rosalyn Carter Institute Caregivers Program (Phase I) Now funded by Scott & White Healthcare (Phase II)

Our Approach Use implementation research methods to embed an evidence-based intervention for family caregivers (Resources for Enhancing Alzheimer’s Caregiver Health II -- REACH II) Leverage characteristics of an integrated healthcare system to target, identify, and enroll family caregivers in need of support Deliver and evaluate the innovative support program on caregiver quality of life indicators Position the program as an asset to Scott & White’s Mission and Vision

Accomplishments of Phase I Implemented an evidence based program in a limited number of primary care clinics and in Scott and White Memorial Hospital in Temple Created A Caregiver’s Notebook that translates REACH II intervention materials Enrolled 164 family caregivers in a 6 month program of support Obtained financial support from expansion of program

Packaging of REACH II Intervention Components Ima Example’s Family Profile Home Safety Home Safety for People with Alzheimer’s Disease assists you to create a safe environment for your husband throughout your home. Managing Stress On your questionnaire, you said you often feel strained when you’re around your husband. Signal Breath is designed to help reduce your stress Stress Diary is designed to help monitor your stress. Understanding Your Feelings You said that in the past month your have sometimes felt sad, depressed or had crying spells. It is common to feel sad, frustrated, and overwhelmed in your caregiving role. Thought Record is designed to help you identify and understand the feelings caused by your caregiving role. Skillful Communication This section describes communication strategies proven by research to be helpful to improve communication with your loved one.

Identification of Caregivers: Prompts embedded in Admission Documentation Inserted a question regarding Alzheimer’s/Dementia in the Past Med/Surg Hx screen Staff development around completion of questions  Only answer “yes” if patient or family member (or both) has a documented diagnosis of Alzheimer’s disease or other dementia (not for altered mental status only)  Follow up with care question

Phase I Recruitment 3,295 Alzheimer’s/dementia patients identified in hospital/clinic 734 Alzheimer’s/dementia patients with CG 469 Eligible patients given CG packet 164 Caregivers enrolled: 84-Low; 75-Medium; 5-High 72 – Completed 6 month questionnaire 2,561 – Not eligible Did not have a CG identified Not identified on eligible floor 265 – Not approached 54 – No CG contact 188 – CG packet not returned 59 – Declined 4 – Patient died 25 – Cancelled 7 – Transferred to CLP 25 – Lost to follow-up 35 – Did not return 6 month RAM

Phase I Demographics Demographic Characteristics of 164 Enrolled Caregivers CharacteristicN (%) Age, mean + SD; (range)64+14; (30-93) Gender Female Male 131 (79) 29 (19) Race White Black Hispanic Other 128 (77) 9 (6) 16 (10) 11 (7) Marital status Married Not married Unknown 130 (79) 25 (16) 9 (5) Lives in rural area (No)145 (87) Caregiver relationship to patient Spouse Child Other relative 79 (48) 67 (41) 18 (11) Time spent providing care All the time Days or Nights only 1-3 times per week Other 110 (67) 13 (8) 10 (6) 31 (19) CharacteristicN (%) Living status Lives with CR Lives within 1 hour from CR Lives more than 1 hour from CR 110 (67) 41 (25) 3 (2) Employed, n (%) Full or part-time Unemployed/Retired 48 (30) 102 (62) CR Age, mean + SD; (range) 81+7; (64-103) CR Gender Female Male 83 (52) 76 (45) CR Race White Black Hispanic Other 127 (76) 8 (6) 17 (11) 12 (7) CR Marital Status Married Not married Unknown 94 (56) 49 (31) 21 (13) Risk Appraisal Measure (range 0-31) Mean + SD; (range)12+5; (1-28)

REACH II RAM as Outcome Measure Overview of the REACH II 16-Item Risk Appraisal Measure (RAM) DomainDefinitionRAM Item Self-care and healthy behaviors Caregiver’s physical well-being and self-care behaviors Caregiver has trouble sleeping Caregiver’s rating of physical health Patient problem behaviors Difficulties in the management of patient activities and instrumental activities of daily living and behavioral problems Caregiver has information on symptoms of dementia Caregiver feels stress when trying to help patients with daily activities BurdenFeels stress due to caregiving responsibilities Feels good as a result of caregiving Caregiver feels stress trying to meet other responsibilities Caregiver feels strain around patient Caregiver feels good as a result of caregiver DepressionFelt depressed or sadCaregiver felt depressed in the last week Social supportSatisfaction with support from friends or family Satisfaction with help from friends Satisfaction with support from others SafetyBeing at risk because of caregiver’s behavior Being at risk because of patient impairment Feel like yelling at patient Refrain from hitting patient Dangerous objects are in the home Patient wanders Patient drives Able to leave patient alone

Phase I Outcomes by RAM Domains Summary of Findings in Primary Outcome Measures by Domain with 6 Month Follow-up (N=72) REACH II Domainp-value Self-care and healthy behaviors0.92 Patient problem behaviors Burden0.002 Depression0.11 Social support0.18 Safety0.005 All Domains0.0002

Phase I Summary Findings Significant decrease in overall caregiver risks reported by caregivers No “high-risk” caregivers at 6 month follow-up Significant questions indicate reduction in caregiver stress, burden, and safety 2009 Rosalynn Carter Leadership in Caregiving Award

Phase II Goals To expand the Family Caregiver Program into other Scott & White Healthcare delivery settings Conduct a cluster randomization trial with the REACH II Quality of Life measure as the main outcome measure –Continue program in Phase I sites (i.e., skills training and support intervention) –Randomize two additional service regions –1 skills training and support intervention –1 education group comparison

Skills Training and Support Intervention 6 month intervention –Baseline Risk Assessment Measure/ REACH II Quality of Life –Create Family Profile and provide A Caregiver’s Notebook –4 planned and 2 optional home visits –6 month Risk Assessment Measure/ REACH II Quality of Life/ Satisfaction Survey

Education Group Components 6 month intervention –Baseline Risk Assessment Measure/ REACH II Quality of Life –Provide educational packet –2 check-in phone calls –6 month Risk Assessment Measure/ REACH II Quality of Life/ Satisfaction Survey

FCP Tool Used to Promote Fidelity Microsoft Access database Uses a series of forms, tables and reports to track the progress of the intervention and log all interactions that occur between the patient and program staff Used to evaluate both intervention implementation and outcomes

FCP Tool: Assessment Session

FCP Tool: Intervention Session

Phase II Recruitment to Date 438 Referrals to Family Caregiver Program 106 Eligible Caregivers 26 Caregivers Enrolled 18 Completed Baseline QoL Tx Regions 1 & 2: 340 Ed Region: 98 Tx Regions 1 & 2: 85 Ed Region: 21 Tx Regions 1 & 2: 19 Ed Region: 7 Tx Regions 1 & 2: 12 Ed Region: 6 Ineligible: 64 Admitted/Discharged to NH 75 Discharged before approached 29 No Caregiver 132 No qualifying diagnosis 13 Reside outside of service area 19 Other Not Enrolled: 10 Declined 43 Unresponsive 27 Other Did not Complete: 1 Lost to Follow Up 1 Withdrew 6 Other

Phase II Demographics to Date CharacteristicN (%) Age, mean (range)67 (43-87) Gender (Female)19 (73) Race White Black Hispanic Other 19 (86) 1 (5) Marital Status Married Never Married Divorced 20 (83) 3 (13) 1 (4) Lives in rural area (No)19 (79) Relationship to CR Spouse Child Other Relative 11 (55) 8 (40) 1 (5) Time spent providing care All the time Days or Nights only 1-2 times per week Other 15 (63) 3 (13) 2 (8) 4 (17) CharacteristicN (%) Living Status Live with CR < 15 min 30 – 60 min 19 (79) 4 (17) 1 (4) Employed Full or part time Retired Homemaker Other 6 (26) 12 (52) 3 (13) 2 (9) CR Age, mean (range)80 (64-101) CR Gender (Female)13 (50) Race White Black Hispanic Other 19 (79) 1 (4) 2 (8) Marital Status Married Never Married Divorced Widowed 18 (72) 1 (4) 5 (20)

Ongoing strategies to promote implementation and sustainability Recruitment –Continue healthcare-based recruitment strategies (e.g., incentives, presentations, integration into other initiatives) –Expand recruitment to community partners (e.g., Area Agencies on Aging, Alzheimer’s Association chapters) Align with other evidence-based health intervention initiatives Assess the “value added” proposition Identify the best “home” for the program

Special Thanks from Scott & White Healthcare to our Partners